Ed Roberts and Judith Heumann need little introduction. They are internationally known as the pioneers of disability rights, as they put the foundations and started the engine of the Independent Living Movement. Their personal experience is as much a demonstration of Independent Living as their professional efforts as activists for equality and human rights for disabled people. With similar disability, Roberts and Heumann shared similar personal struggles of bringing down societal barriers. They both transformed their personal struggle into something much bigger, a lifelong advocacy for disability rights, eventually leading to an international movement for equality and Independent Living. As ENIL celebrates the Independent Living Heroes of the past, present and future during its 8th edition of the Freedom Drive from 24 to 28 September 2017, this month is the perfect time to honour these two great minds in our newsletter.
The father of the Independent Living Movement, Ed Roberts (Edward Verne Roberts) was born in 1939 in San Mateo, CA, United States. At the age of fourteen he became paralyzed from the neck down due to polio. A doctor once told his mother that she should hope that Edward dies, as otherwise he would be no more than a vegetable for the rest of his life. Roberts jokingly remembered that at that point he
“decided to be an artichoke – a little prickly on the outside but with a big heart.”
And so, after months of hospital stay, he returned home to start a life that would set an example for all disabled people; a life that was not only a demonstration of Independent Living, but also a tireless struggle for one. He began by teaching himself to use the “frog breathing” technique, using his facial and neck muscles to ‘swallow’ air to survive outside the iron lung during the day.
Due to initial fears, young Edward attended school by telephone. However, thanks to the persuasion of his mother Zona, he overcame his insecurities and soon claimed his new identity proudly, which he maintained throughout his life. So, Roberts started attending the Burlingame High School (CA) once a week as a senior. However, already in high school he began to face challenges with an educational system that only catered to non-disabled students. Since he did not complete physical and driving education, the high school initially refused to grant him a diploma. This decision was eventually reversed thanks to Roberts’ and his mother’s combined struggle for recognition of his academic achievements.
Eight years after Ed Roberts’ birth, Judith E. Heumann (or “Judy” as called by friends) was born in 1947. Similar to Roberts, Heumann became disabled by polio at the age of 18 months, and has been a wheelchair user throughout her life. Heumann’s first challenge was also related to the inaccessibility of the academic system. She had to fight herself into mainstream education, as the local public school labelled her as a fire hazard and did not want to accept her. However, Heumann, with her community activist mother on her side, reversed this decision and was eventually allowed to attend school starting from fourth grade. Her struggles were only starting though. Heumann had to also fight for her diploma: since she had not participated in gym classes, the school was reluctant to allow her to graduate. This decision was however again reversed in her favour, but young Judy was denied access to her graduation ceremony as a teacher considered she could be a fire hazard.
In the next step of his life Ed Roberts again had to fight for his right to education, as he tried to get admission at the University of California in Berkeley. The school refused to admit him, arguing that they are unable to accommodate his iron lung. The university dean famously proclaimed “We’ve tried cripples before and it didn’t work.” Ed Roberts turned to the California Department of Vocational Rehabilitation, an agency which was supposed to support him with his access needs to enable him to attend the University. On the contrary, the centre deemed him “too severely disabled” to be employed later on, therefore not suitable for support. However, again together with his mother as one of his most loyal allies, Ed Roberts prevailed and was able to enroll at the University. Commencing his studies, Roberts had to agree to stay at the empty wing of the Cowell Hospital Campus of Berkeley, as it was the only part of the university campus suited to accommodate him. He was soon joined by other disabled students, and transformed the residence into a dormitory and activism base. With a new empowered identity Roberts and his friends formed a group called “Rolling Quads” and began to politicize their experiences, turning them into powerful activism that would soon impact not only the campus but also the wider community. In a few years the Cowell Residence Program was developed to assist severely disabled students to attend university. Initial success on campus motivated the group to campaign for wider accessibility, advocating for curb cuts, and creating the Physically Disabled Students’ Program (PDSP) as the first student-led disability service program. It provided wheelchair repair services and advised disabled students on acquiring assistance, and soon gained popularity in the community, being contacted by disabled people from off campus.
As Judith Heumann enrolled at the Long Island University, she too began a full-fledged fight for equality. She started organizing demonstrations and protests with her fellow disabled students at the University. After graduating with a teaching degree in 1969, she was denied her teaching license by the New York City Board of Education. The decision was again based on the judgement that Heumann would not be able to evacuate herself and her students in case of a fire emergency. Yet, again Heumann prevailed, taking the case to court and becoming the first person in a wheelchair to teach in New York City, which she did in the capacity of an elementary school teacher for three years. Advancing her academic career, Heumann also gained a Master of Science degree in public health at the University of California, Berkeley in 1975. Additionally, she has been awarded honorary doctorates by Long Island University in Brooklyn, the University of Illinois at Urbana-Champaign and the University of Toledo.
In 1972, the disabled activists of Berkeley founded the first ever Center for Independent Living (CIL). Although Ed Roberts did not found the center himself, he soon took leadership and guided it in a crucial time for the disability rights movement. This new model of a disabled people’s organization, based on peer support and self-advocacy and providing community-based services to empower disabled people, was so successful that it soon was implemented throughout the country and internationally, with over four hundred CILs in the United States, and similar programs in twenty countries worldwide.
Ed Roberts’ empowerment of others wheeled ahead with his personal and professional development. As he commented in an interview once, the realization that he could help others liberated him and made him much freer to help himself. In 1964, he completed his Bachelor studies in Political Science at UC Berkeley and earned an M.A in Political Science from the University two years later. He thought political science at the university for six years and produced a number of publications available at the Bancroft Library at UC Berkeley. During this time he flew to Washington D.C. to advise the US Bureau of Higher Education on their guidelines for the Higher Education Act of 1965. He took this opportunity to secure funding for the newly founded PDSP. In 1976, Governor Jerry Brown of California appointed Ed Roberts as the director of the California Department of Vocational Rehabilitation. He directed the institution, which once dismissed him as ‘too severely disabled’ to work, overseeing a staff of more than 2500 employees and a budget of $140 million until 1983.
Given her continuous struggles as a disabled person, Judith Heumann dedicated herself to fighting for the rights of disabled people. In 1970, she founded “The Disabled in Action” (D.I.A.), an organization aiming to ensure the protection of disabled people’s civil rights. The organization set
“… to address our problems in a forthright, political way, to show that we were not helpless and disempowered”.
In 1974, she contributed to the development of the Individuals with Disabilities Education Act, serving as legislative assistant to the chairperson of the U.S. Senate Committee on Labour and Public Welfare. Being a pioneer of the Independent Living philosophy, Heumann soon moved to Berkeley to serve as Deputy Director of the Center for Independent Living. In 1977, as part of a national campaign, Judith Heumann together with her fellow activist Kitty Cone led a successful sit-in at the San Francisco Office of the U.S. Department of Health, Education and Welfare, forcing the U.S. Secretary of Health, Education and Welfare Joseph Califano to sign the Section 504 of the Rehabilitation Act, the first U.S. federal civil rights protection legislation for disabled people. The regulations ensured that no program receiving funds from the federal government could deny access, services, or employment to someone solely on the basis of their disability. The 28-day sit-in of more than 150 people of all backgrounds and ages remains the longest in a U.S. federal building to date.
In 1983, Ed Roberts and Judith Heumann, together with their activist friend Joan Leon, co-founded the World Institute on Disability (WID). Roberts travelled extensively to Russia, Australia, Japan, and France to promote the Independent Living philosophy. In 1984, Roberts received the MacArthur Foundation “genius” award and invested the grant into further advancing WID. Today, with a global reach, the Institute focuses on disability policy, research and consulting and provides services with the aim of eliminating barriers to full social and economic integration of disabled people.
Judith Heumann served as Co-Director of WID until 1993. She continued her work for disability rights as an Assistant Secretary for the Office of Special Education and Rehabilitative Services in the U.S. Department of Education until 2001. She went on to perform the role of the World Bank Advisor on Disability and Development, leading the organization’s work on disability until 2006. For the next four years Heumann worked as a leading consultant to the Global Partnership for Disability and Development, and served as the Director of the Department of Disability Services for the District of Columbia. In 2010 she became the Special Advisor on Disability Rights for the U.S. State Department under President Barack Obama. She led the Obama Administration’s efforts in developing a comprehensive strategy to promote the rights of disabled people internationally. This implied coordinating an interagency process for the ratification of the UN Convention on the Rights of Persons with Disabilities, making sure that foreign aid incorporates disabled persons, leading disability human rights issues and ensuring that the needs of disabled people are taken into account internationally, as well as conducting public diplomacy, including with civil society, on issues related to disability.
In 1976, Ed Roberts married Catherine Dugan. They had a son, named Lee, whose custody they shared after their divorce in 1982. Roberts died on 14 March 1995 from cardiac arrest. In May, his wheelchair, pulled by a volunteer, symbolically led more than five hundred activists from around the United States for one last time on a memorial march to the Upper Senate Park, where notable speakers, including his fellow activist and dear friend Judith Heumann paid tribute to his honour.Judith Heumann now lives in Washington, D.C. and is married to Jorge Pineda. She has appeared in the 2011 disability rights documentary “Lives Worth Living”,  and has received the Rotary Peace Grove Award by Berkeley Rotary Club in 2014 and the Henry B. Betts Award from the Rehabilitation Institute of Chicago. Heumann recently started a discussion on the intersectionality of disability rights through social media.
Both Ed Roberts and Judith Heumann have been avid supporters of the European Independent Living Movement, maintaining close relations with ENIL. In 1984, both participated in the first Scandinavian conference on Independent Living organized by Adolf Ratzka. Heumann also spoke at the Strasbourg Freedom Drive 2013. This month ENIL celebrates these two great individuals and their lifelong dedication to equality and justice, honouring them in the ENIL 2017 Freedom Drive: Independent Living Heroes of the Past, Present and Future.
 Zona Roberts’ and Judith Heumann’s mother’s examples demonstrate the importance of non-disabled allies in the Independent Living struggle. With this consideration ENIL has chosen “Being an ally to your child (for parents and carers)” as one of the Motivational workshop topics to take place on 25 September within the ENIL 2017 Freedom Drive campaign.